Tuesday, January 31, 2012

If I could, I would send Chris to his favorite place in the world for a week. I would go with him if he wanted me to, but my favorite place to visit is very, very different. This video shows why separate vacations aren't always a bad thing...

inspired by : 1) It’s time for an adventure! What is the best place you’ve ever traveled? Tell us a bit about it and show us what to do if we were to go there.

Monday, January 30, 2012

TweetGIMP
GNU Image Manipulation Program (GIMP) is an Adobe Photoshop-like free image editing program. It is not quite as user-friendly as Photoshop, but, well, you get what you pay for, I suppose. I have not done a whole lot with it because Picnik has always suited my very simple photo-editing needs. Now that Picnik is on its way out, I will be working more with GIMP to edit photos for this blog.

I do, however, use GIMP for editing screenshots. It has an easy to use cropping tool. I used it extensively for my post, "Osama is dead, now what?"

1 - Take a screen shot of your computer screen (this works for screenshots from my iPhone, also) and paste it into the open GIMP application.

2 - Select the "crop tool" from the GIMP toolbox.

3 - Select the area you would like to crop. This tool maintains straight edges; you merely drag the selection box to cover the area you want to crop.

4 - Hit "enter." Then, under "layer" in the GIMP editing bar, select "Anchor Image" (Ctrl +H), and then save the image. You can choose what folder to save it under and various file formats.

That's it.

I have actually found it to be easier to edit screenshots with GIMP than with other software that came with my computer. These tips also work for editing screens shots from Facebook and other web pages.

Do you use GIMP or any other free tools for image editing? What is your favorite? Any tips for the novice image editor?

Thursday, January 26, 2012

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Some women know from birth that they want to be stay-at-home-moms (SAHM). Some know without a doubt that they want to continue working at or outside the home (WAHM or WOHM). Others, for a variety of reasons, don't have a real choice.

Laptop, iPhone, Beer, Dog, Baby - everything a new mom needs

I put myself in the last category because I was unemployed when I got pregnant and, really, who wants to hire a pregnant woman? (legalities aside, I'm talking about reality)

Honestly, I never imagined myself becoming a mother, much less a SAHM, so I sort of fell into it due to the severely lacking local non-profit job market.

Thankfully, I like it.

Chris & I worked hard to become debt free but the house and we had been living on one income since we left California. The cost of childcare in the area combined with the experience of more than a year on a single-income budget made it relatively easy for us to decide that I would continue to stay at home with Klaw. When Klaw was born with VLCADD, it suddenly became a blessing that I was unemployed.

Staying at home with Klaw has been the best decision several times over for our family. I don't, for a second, think it's the best decision for every woman or every family. My "mom" friends fall all across the spectrum when it comes to this issue, from a mechanical engineer who left a lucrative career because she wanted to be able to stay at home with her children to a mom who, thanks to downsizing, is a stay at home mom due to circumstances not of her own making. Additionally, many of my friends are working moms through both choice and necessity.

What I do believe is that the people who continue to pit WOHMs & SAHMs against each other need to be stuck in a room full of mosquitoes and no fans. (I'm looking at you, Anderson Cooper, cutie pie)

I have been a caretaker to other people's children as a babysitter, an educator, a day care employee, and as a nanny. When people make derogatory comments about childcare providers, I take it personally. I, as do most people who make a career out of working with children, cared & still care deeply for the children who were entrusted to my care. I took the responsibility very seriously and still maintain relationships with many of the families I worked with.

3 of the kids I nannied in Washington supporting me at a concert

I wasn't raising other people's children; I was doing my best to be another trusted adult in these kids' lives and help instill the values of the family I was working for.

At the end of the day, you need to make the decision that works best for your family. Whether you stay at home or work outside of the home, you need to be happy & confident in your decision. If you aren't, find a way to make a change.

Wednesday, January 25, 2012

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What the heck is Blissdom? Basically, it's a conference for women bloggers in Nashville. I happen to be a woman who blogs, so I thought I might go.

Okay, it's a little more than that.

There are several conferences held all over the country for bloggers but Blissdom sounded like it might be a good fit for me. Blissdom 2012 will have sessions on Business, Life Development, Photography, & Writing. I'm not so interested in Business or Photography but the Life Development & Writing tracks seem interesting to me.

Well, Meghan from The Tuckers Take Tennessee & Creative Kristi teamed up to host an online ice-breaker for attendees to use to introduce ourselves ahead of time. I'm going to use this as an excuse to share a few facts about myself that haven't necessarily been covered by my "official" About Us page.

1 - I don't always wear sunglasses. This is is what I look like without them. Since I'll be inside at Blissdom, I probably won't have my sunglasses on all the time...like I do in most of my profile pictures.

2 - I generally like food. I really hope the food at Blissdom is good. I don't like buffets or any meat generally served on a buffet...partially because I don't eat a lot of meat. I also don't eat seafood when I'm inland and I may be allergic to shrimp, a buffet favorite. I don't like overcooked vegetables or chocolate cake - also regularly found at conference buffets. All of these things make it difficult for me to be fed when food is served in mass quantities. Anyways, if you see someone who keeps going back for more rolls, it's probably me. I tend to eat a lot of rolls at conferences...as long as they aren't sourdough or rye.

3 - I make lots of faces. Sometimes it's on purpose; sometimes it's because I'm thinking, "Really, what in the hell was he/she thinking? I wish I owned his/her mirror. DAYUM!"

4 - I hope that I'll get some good tips on how to further use this blog to spread awareness about Klaw's VLCADD & mitochondrial diseases, in general. It never hurts to get some tips on better writing and time management, while I'm there. I also hope I can connect with some other parents raising kids with special needs (hint, hint - don't be a stranger).

5 - Sometimes I have nose bleeds. It's nothing to be concerned about, I promise. Just hand me a tissue if I need one.

6 - Every once in a while, I get possessed*. If you see me looking like this:

RUN

Can't wait to meet a whole bunch of people at Blissdom!

Bonus - would anyone like to guest post for me during the last week of February & first week of March? Right after Blissdom, we are taking Klaw to a follow-up appointment with Dr. Vockley in Pittsburgh, so I'm going to be a bit distracted. Topics could include a post about your special needs family member or rare disease close to your heart, "greener living" topics, or really, just about anything. I'm open to ideas. Pop me an email at ReallyWhatWereWeThinking (at) gmail (dot) com.

Monday, January 23, 2012

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I fell in love with the Virginia Living Museum the very first time I visited. The entire museum is kid-friendly but packed with enough educational information to be interesting to adults, also.

The price per visit is pretty steep but the various membership packages are well-worth it and will save you a ton of money if you plan to visit the museum more than once or twice a year.

the "big" ocean life tank

Klaw is not reading at the moment and he has the attention span of a gnat, unless he has an iphone in his hands. The Virginia Living Museum offers indoor & outdoor space for him to have lots of visual stimuli without being overwhelmed by loud noises (okay, maybe I'm the one that doesn't like loud places).

running through one of the ecosystem exhibits

The Virginia Living Museum takes you through the various ecosystems found within Virginia, including plants, animals, topography, & a bit of history. They have several tanks that are made to be easily viewed by children & adults alike. They are always well-staffed with incredibly knowledgeable volunteers who are there to share tidbits about the animals and exhibits through the museum.

one of the smaller "river" tanks

There is a nice boardwalk that gives you access to view various mammals and birds in a more natural setting. I don't have any good pictures of the boardwalk because Klaw likes to run the whole way around. He does occasionally stop and call the wolves "Seh-sah," which is what he calls our dog, Samson.

an alligator

The Virginia Living Museum also has garden exhibits, a "green" house that explains different eco-friendly building techniques, and a planetarium. We have yet to take advantage of the planetarium because of Klaw's age and attention span.

I honestly love this place and we try to go at least twice a month. School & daycare groups do visit a lot, so it is sometimes very crowded during the week but we've always managed to have a good time. Another reason having a membership is so great is that if it is crowded or Klaw is having a tough day, we can always come back another time.

"I begin to shake. My whole body trembles and he begins to tell me how she will never be able to get on the waiting list because she is mentally retarded."

According to Amelia's parents, "Mental Retardation" was listed as one of several contraindications for a transplant along with illnesses such as HIV and Hepatitis C. Amelia does not have HIV or any of the other disqualifying diseases (this has been confirmed by her mother). She is cognitively delayed and this transplant team has decided that her life is less worthy than the lives of other children.

Put yourself in their position. Imagine being told your mentally delayed, developmentally delayed child, your child with a rare genetic disorder is ineligible for a transplant because of something they can't control. This isn't a smoker who refuses to quit in need of a lung transplant. This isn't an alcoholic who refuses to get help in need of a liver transplant. This isn't a person in a "persistently vegetative state" being kept alive by machines.

This is a child with a disorder whose kidneys are failing and will die without a transplant.

I keep thinking about kids like Klaw. VLCADD can affect the heart & the liver. What if he one day requires a liver or heart transplant? Would he be denied because his condition cannot be cured? Will he be safe solely because he's not "mentally retarded?" Would he be placed ahead of someone else because he is cognitively typical and a transplant team deems his life as more valuable than another child with cognitive delays?

6)Ladybugs and worms are your friends. Use them. (But again, have someone else do this part).

7) Certain flowers such as marigolds and nasturtiums will help keep pest bugs away so plant these flowers all around in the garden.

8) Pick your produce as it’s ready.

Note: If you follow these steps and your garden fails I assume no personal liability. Instead, I will allow you to come over and work on my garden to learn from a pro because I’m nice like that. You’re welcome.

Tuesday, January 10, 2012

In light of that, I decided to not post a vlog today. It didn't seem appropriate under the circumstances. I am taking a step back from blogging & social media for a little bit. There are a few posts already in the queue that will post as scheduled.

She is finally whole & at peace, but that doesn't make her absence any easier to take. She was completely in love with her husband, children, & grandchildren and a wonderful example of a mother to all of us. She was always quick to share a laugh, hug, or reassuring word.

Monday, January 9, 2012

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When you have a blog, you have the ability to keep track of information regarding how & when your blog is accessed, most popular posts, number of visitors, how much time users spend on your blog, etc. My favorite data are the Google search keywords. I have literally guffawed at some of the search terms that lead to our blog, so I thought I'd share a few gems with y'all & link to the posts I must assume they are trying to find...

Chris always makes a huge impact on my stats whenever he's on the blog...especially when it involves dirtstaches & unibrows:

ugly annoying christopher
dirtstache december
i have a unibrow and i want to get rid of it but im not allowed
i think unibrows are hot

brunswick, ga why does it stink - the actual answer is a combination of paper mills (which everyone will agree on the amount of stink these cause) and a rich marsh ecosystem (which most of us locals consider to be the smell of life & not stinky at all).

Outside of all of the VLCADD posts, I can only assume the following search term also belonged to Klaw:

Wednesday, January 4, 2012

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We started the Christmas season by visiting Busch Gardens for their Festival of Lights over Thanksgiving break. Klaw enjoyed his first exposure to theme park rides but he did not enjoy waiting in lines. At all.

For Christmas, we were all happy. Klaw liked everything he received, as evidenced by his facial expressions. Chris got the watch he's been wanting & I got a new boyfriend.

Monday, January 2, 2012

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Soooo...I don't make New Year's resolutions because, seriously, who actually keeps them? I don't like to set myself up for failure. That's counterproductive to my ego.

Anywhooo...I am contemplating a change. A big change.

No, not a big change like a baby...but a big change, nonetheless.

I'm thinking about volunteering with the United Mitochondrial Disease Foundation as an Ambassador. There isn't a chapter, group, or ambassador in our area. When I contacted them about the nearest chapter, I found out it's in D.C. That's a really long drive, in case you were wondering. The nearest Ambassador is over an hour from us & even further from the more populated areas in Hampton Roads.

So...6 months later, I'm considering it.

Technically, my official duties as an Ambassador would definitely utilize my professional skill set. It would require being available to local families/individuals affected by mitochondrial disease to help direct them to resources and information (NOT diagnosis, treatment, or counseling). I would be required to share educational resources with groups like doctors, hospitals, or even hosting a table at local event. Organizing a local awareness event would also be on the list of things to do.

I have done all of these things in some capacity with previous jobs and they are well within my comfort level.

My concerns lie with the fact that I have a very active & energetic toddler. I can barely find time to blog. I question my ability to hunker down and organize MYSELF well enough to be an effective ambassador for UMDF. I'm hoping my upcoming trip to Blissdom 2012 conference will help me clarify some of my personal and professional goals.

My other, and probably biggest concern, is that there is a fundraising aspect to being a UMDF Ambassador. I have never been good at or comfortable with raising money. There is, thankfully, not a specific amount I would need to raise, I'd just have to do some sort of fundraising. My stomach churns thinking about it.

However, even while my stomach churns, I remind myself that Klaw's VLCAD deficiency is being managed successfully through diet and supplements. For many people with mitochondrial disease, it is progressive and degenerative. Part of me feels like I have the time (somewhere) and the resources to do this, which means, in my world, I have a moral obligation to do this.

Yes, this is a me, me, me post but it's weighing heavily on my heart and my mind. I know there are other families affected by mitochondrial disease in Hampton Roads and I love a good cause. I think I need to get this out in the universe:

Can I do this?

Can I make a difference?

Do I need to just quit stalling and put on my big girl panties?

Slightly related: I publish a #KnowAboutMito online newspaper through Paper.li, if you are interested. It updates daily with links, blog posts, & articles related to mitochondrial disease & genetics.